Abstract

Historically, the ability of people diagnosed with medical conditions to meet and organize has been restricted to real-world support groups and exchanges of support. The pre-web Internet digitized these interactions to allow patients to communicate from the comfort of their homes and a time of their choosing. More recently, the era of the social network, “big data”, and ubiquitous electronic devices have combined with the patient empowerment movement to create a number of opportunities in human computation. Today, patients with serious illnesses are sharing their medical data online whether it is their genetic profile, treatments, symptoms, outcomes, or treatment evaluations. They are not only contributing to research by donating their data, they are mobilizing to conduct their own research in ways that can circumvent and even outpace the traditional medical establishment. Most significantly for the existing system, patients have shown that through their distributed human computation they can predict the outcome of clinical trials, one of the most expensive parts of the healthcare research process that can cost anywhere from $300 m to $1.2b to run and which could mean the balance of power will shift from patients as “subjects” to truly becoming informed and empowered participants. In this chapter we consider the history of the online patient movement, recent advances in distributed data collection and analysis by those with serious illness, the benefits accruing in the “virtuous circle” of condition-orientated human computation, the burgeoning availability of continuous sensor networks through smartphones, and briefly consider some of the risks and limitations of current approaches.